I'm 53 years old and although this isn't a club I ever wanted to join (as I'm sure no one has) I was diagnosed on Friday with Prostate Cancer and three of the total twelve biopsies on the left side of the prostate reavealed a Gleason 8, others a 7. I really don't know much yet (and haven't wanted to) but I guess it's time to start learning. I guess a Gleason 8 is kind of bad. I'm set up for a bone scan this Friday if my insurance approves it by then. Logic tells me to get this cut out ASAP but the insurance takes 5-7 days for every approval. I don't know how critical timing is, but with an 8 I'm feeling the sooner the better. Then I just read about a waiting time between biopsy and surgery. My Dr. never mentioned that...he was ready to do it Monday until the insurance slowed it down. Should I be concerned about that? I suppose if I have a positive bone scan I'll be screwed either way but I'll crosss that bridge if and when I come to it. As I said, I'm new to all this..and still in shock. My PSA was only a 3.5 so it surprised the Dr. too. He though it would be negative or at least a wimpy cancer but according to him an 8 isn't wimpy. He can't do robotic because I had a sigmoidectomy last year and said too much scar tissue,etc so open surgery is the plan. Do you think I'm jumping the gun on deciding to go the surgical route so quickly? Is there other stuff I should know before making that decision?He said he couldn't spare the nerves on the left side where the cancer is but can on the right leaving me a 40% chance of ever being functional, if you know what I mean. Sex life may be a thing of the past and he said I need to get my head around the fact that I will never be the same. To go at this with a roll with the punches attitude...don't fight it, just go with the flow. I know there's a lot of educating to be done and I am dreading what I'm about to face. I guess I want to know how bad is this going to be? I hear I have to have a catheter in for two weeks following surgery and taking it out can be the worst part, then wear an adult diaper for two months...and then maybe be continent. I hate to sound like a such a wimp but this absolutely sucks. I guess the more I know the better I can prepare so any advice is appreciated. Thanks and sorry for such a long, whiny first post. I guess I'm just a little freaked out.
Last edited by rcroller; 05-01-2011 at 08:19 AM.
The following user gives a hug of support to rcroller: Gleason9 (05-03-2011)
Welcome to this board that none of us wanted to have anything to do with! You are reacting like I did - get it out fast! Surgery may turn out to be the best course, but there are other options that could be superior, and it is very important to follow the sequence Ready, Take Careful Aim, Fire, rather than Fire, then take Aim. (Fortunately, with my high-risk case and a fine medical institution handling my request, I was rejected for surgery. I'll insert a few points in green and expect to add more later.
Quote:
Originally Posted by rcroller
I'm 53 years old and although this isn't a club I ever wanted to join (as I'm sure no one has) I was diagnosed on Friday with Prostate Cancer and three of the total twelve biopsies on the left side of the prostate reavealed a Gleason 8, others a 7.
I cannot overestimate the importance of having the pathology samples analyzed by an expert in prostate cancer pathology. Many of us have our first reading down by a general pathologist, and they frequently get the Gleason off a bit, more often underestimating it, but also overestimating it. A couple of outstanding books with information about this are "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano, 2005, and "Invasion of the Prostate Snatchers," by Ralph Blum and Dr. Mark Scholz, MD. The latter is especially good on helping patients decide which therapy would be best for them.
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I really don't know much yet (and haven't wanted to) but I guess it's time to start learning. I guess a Gleason 8 is kind of bad. I'm set up for a bone scan this Friday if my insurance approves it by then.
It will probably be covered because of the Gleason 8, but it is almost certain to be negative. Bone and CT scans are no longer recommended for lower-risk patients but are reasonable for Gleason 8 and higher PSA patients.
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Logic tells me to get this cut out ASAP but the insurance takes 5-7 days for every approval. I don't know how critical timing is, but with an 8 I'm feeling the sooner the better. Then I just read about a waiting time between biopsy and surgery. My Dr. never mentioned that...he was ready to do it Monday until the insurance slowed it down. Should I be concerned about that?
You are rushing. You should at least get a consultation with a radiation oncologist who is completely independent of your current surgeon and not recommended by him! (Otherwise, there is a strong likelihood that you will not get an objective consultation, unfortunately. A local support group, such as one of the many chapters of Us Too International, can probably provide some good leads.
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I suppose if I have a positive bone scan I'll be screwed either way but I'll crosss that bridge if and when I come to it. As I said, I'm new to all this..and still in shock. My PSA was only a 3.5 so it surprised the Dr. too. He though it would be negative or at least a wimpy cancer but according to him an 8 isn't wimpy.
Many higher Gleason prostate cancers produce relatively less PSA because the cells are so broken down.
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He can't do robotic because I had a sigmoidectomy last year and said too much scar tissue,etc so open surgery is the plan.
That might be an issue for radiation too, but it would be wise to consult with a good radiation oncologist about the potential of radiation for you. Radioactive seeds, placed only within the prostate, might solve the sigmoidectomy issue.
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Do you think I'm jumping the gun on deciding to go the surgical route so quickly?
A definite yes to that!
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Is there other stuff I should know before making that decision?...
I am absolutely convinced that it's very important for patients with challenging cases, as yours may be, need to become empowered. The two books above would be an outstanding start.
Thanks, Jim for the information. I appreciate your cogent advice. I'm going to call my GP tomorrow to get an appointment to discuss all this with him, who I do trust. The Urologist's office is supposed to call tomorrow with a surgery date so that may be my opportunity to slow this train down a bit. Thanks again for your input. I do appreciate it.
-Bob R.
You're welcome rcroller. You might also want to check publications (resources, papers) from PCRI (the Prostate Cancer Research Institute), a non-profit organization.
Like you, I was diagnosed with a Gleason 8 pc in 2005. My psa count was only 4.1 but as Jim said, a high grade pc can produce little psa because the cells are so disorganized. My urologist said, as yours did, a G8 is not a good thing. I discussed different options with him ( he gave me a book to read about the different ways to treat pc ) and I decided to go with the surgery simply because I wanted to get the damned thing out of there.
For almost 3 years after the surgery, my psa was undetectable and then it returned. My next option was radiation which I finished 2 years ago. So far my psa count is still undetectable but because my cancer is a G8, I expect it will return in the future.
There is another fellow that frequents this site that also has a G8 and after his surgery, he went 5 years before it returned. He had radiation after that and lasted for another 5 years before it came back again. He is on hormone therapy now but unfortunately that is not a cure for prostate cancer, but does prolong life.
If I would have had a good family doctor, I would have caught this thing before it developed into a G8 and, according to my urologist, there would have different methods of treatment available for me. Incidentally, 80% of prostate cancer victims are in the Gleason 5,6, or 7 category. Only 10% are in the Gleason 8-10 and the other 10% are less than G5.
Whatever you decide to do, I hope it works out well for you and you live a long life.
I just read Lionel's post to you, and it led me to think of the board's search options. You might want to try plugging in "Gleason 8" under the board's Google Custom Search option. I just did that and got leads to ten areas.
There is a clinical trial going on now at MD Anderson in Texas that you might want to take advantage of. They are looking for men with Gleason 8 or more who have not yet had a prostatectomy. They will give one shot of Lupron, and later two shots of ipilimumab, and then will perform a prostatectomy. This is a Phase II trial so you will get the full treatment (There is no placebo or other control).
The advantage of this for you are that:
Lupron before RP (this is called neoadjuvant hormone treatment) has been shown to have better results than RP alone in men with aggressive disease.
Ipilimumab, which has just been approved for melanoma, is probably the best new anti-prostate cancer drug in the arsenal. It works by activating an immune response that targets the cancer cells only. The price is around $30,000 a shot, so if you can get it free on a clinical trial, that would be an amazing savings.
I hope it's not the case for you, but as you know, RP for Gleason 8 is typically the start of several treatments that may involve radiation and hormone therapy. It would be great if you could circumvent all that with a few shots prior to treatment.
Below is the link to details about the clinical trial, giving contact details. I don't know if your sigmoidectomy would exclude you, but I think it's worth a shot. Ask about the costs. Usually they pay for the drugs and you pay for the rest, but since Bristol-Myers Squibb is sponsoring it, and they have deep pockets, they may pay for more, since this would involve 4 round trips to Houston for you.
Well, it has been a couple of weeks since my diagnosis. Alot has happened in that time; I've done my homework, made my Tx decisions, and am scheduled for an Open RP tomorrow morning at 8:30. The trial above would have been nice but I have really crappy insurance and it is very limited in terms of the available network. Something like that just wouldn't realistically work and that is a reality I must contend with. I am greatful that I have insurance as many are not so fortunate. I do; however, feel as though I'm in good hands. My Surgeon has done hundreds of these and I'm as ready as I'll ever be. I'm not one to waste time, and especially as a G8. The prep today wasn't much fun but no big deal really. My attitude has gone from grim to positive over the past two weeks and I feel like I'm ready for whatever lies ahead. So, the tough decisions have been made and now I can kick back and let the experts do their thing. I hope to be out of the hospital as soon as Friday and will let you know how things went from the other side(recovery that is). Best to all,
-Bob
Good luck and God Bless Rcroller. It's good you have confidence in your surgeon. They have to tell you the worst that can happen, and it's scary. Please keep us updated on your situation.
Just to follow up I will have been home for a week tomorrow post surgery. It all went pretty well. The pathology report down graded my Gleason to a 7, 4+3. The JP Drain and Cath are scheduled to be removed next Wednesday so living to learn with tubes in me and spasms. Not a great time but could be worse. Post Op Pathology Report results as follows:
Specimen size: 48 grams
Portion involved by tumor: 7%,
Nodule 18mm, left posterior lateral lobe
Extraprostatic extension present in left lobe
Seminal vesicle invasion: Not identified
Margins: Tumor found in periprostatic tissue extending to within less than 0.1 mm of inked left margins; no glands identified directly at inked margins.
Lymph-Vascular invasion: Not identified
Perineural Invasion:Present; peri-prostatic soft tissue
Primary Tumor: pT3a
Regional lymph nodes: pN0 - 0/5 pelvic lymph nodes
Distant Metastasis: pM0
Additional findings: Nodular prostatic hyperplasia
So, not the best or the worst. Dr. says high risk for recurrence and will follow with PSA every three months. Hopeful that he got it all. As you can see the margin was negative but just barely(<0.1mm). Very close and glad I moved to treatment so quickly...just three weeks post biopsy. Much more time and margins would have been positive. Looking forward to getting the tubes out and getting on with the next phases of recovery.
Last edited by rcroller; 05-26-2011 at 05:10 PM.
The following 2 users give hugs of support to: rcroller Baptista (05-27-2011), nancyjm (05-26-2011)
I was at Tallahassee Memorial Hospital-(TMH). I actually wanted to use the Regional Hospital which I used last year for my Sigmoidectomy but would have had to wait an additional month to get scheduled there and didn't want to wait. With the margin being so close I'm glad I went with TMH and honestly I thought the level of care I received at THM was better, although the physical surroundings not as nice. I was only in W-F so it was a short stay anyway.
The following user gives a hug of support to rcroller: jellybean3009 (05-28-2011)
The first thing you need to do is slow down and get yourself educated. Just because your doctor states what he thinks you should do does not mean that is the best course of treatment or what you might want to do. You are the person in charge of all health decisions and cancer is an important life changing one. First, make sure that you get second and maybe even third opinions on everything including your lab results. Heck, my husband had two biopsies just on the chance that the first one was read wrong which does happen. Next, explore all of the options that you have. We went to Vattikuti Institute for the robotic surgery and you could always talk with them about your situation to see if in fact it is true that you can't have robotic. I would think a skilled doctor could do it even though you've had the sigmoid surgery. Did the doctor say how he can already tell what nerves can be saved? Ours could not really tell until he got in there and he saved them all. Also, did you ask your doctor if this cancer has anything to do with your colon cancer? Might just be a coincidence but I would want to know. While I know it's hard, try not to worry yourself. Cancer loves things like stress, unhealthy lifestyles. So try to take care of yourself, eat right, exercise, get sleep and don't rush into anything. You don't want to do something and regret it later because you rushed into it. If the cancer has not spread, count your blessings and even if it has there is still treatment for that. Also, we had six months in between diagnosis and surgery so try not to worry. I'm happy to report that he is now cancer free! I hope you will experience the same outcome.
I'm so glad your surgery went well, great news. I looked over your pathology reports and do not understand why you surgeon is so negative about the chances of it returning. My husband's pathology was very similar and was never told this by anyone. Also, I see that they were wrong on the Gleason. This is why I tell everyone to make sure they get their biopsies examined by a professional and get 2nd, 3rd opinions. Had you known this you might have been able to find a doctor to do it robotically. I've been very impressed by what the doctors and robotic instruments can do. Also, aren't most medical trials free? Best of luck in your recovery. I know cancer is a terrible disease and hopefully we will find a cure!!
Quote:
Originally Posted by rcroller
Just to follow up I will have been home for a week tomorrow post surgery. It all went pretty well. The pathology report down graded my Gleason to a 7, 4+3. The JP Drain and Cath are scheduled to be removed next Wednesday so living to learn with tubes in me and spasms. Not a great time but could be worse. Post Op Pathology Report results as follows:
Specimen size: 48 grams
Portion involved by tumor: 7%,
Nodule 18mm, left posterior lateral lobe
Extraprostatic extension present in left lobe
Seminal vesicle invasion: Not identified
Margins: Tumor found in periprostatic tissue extending to within less than 0.1 mm of inked left margins; no glands identified directly at inked margins.
Lymph-Vascular invasion: Not identified
Perineural Invasion:Present; peri-prostatic soft tissue
Primary Tumor: pT3a
Regional lymph nodes: pN0 - 0/5 pelvic lymph nodes
Distant Metastasis: pM0
Additional findings: Nodular prostatic hyperplasia
So, not the best or the worst. Dr. says high risk for recurrence and will follow with PSA every three months. Hopeful that he got it all. As you can see the margin was negative but just barely(<0.1mm). Very close and glad I moved to treatment so quickly...just three weeks post biopsy. Much more time and margins would have been positive. Looking forward to getting the tubes out and getting on with the next phases of recovery.
Just a quick update...had my four week post-op follow up yesterday and my PSA has now dropped to <0.1 which is as sensitive as the testing gets around here. They consider that "undetectable" and is as good as it gets, so good news and a good baseline...now just hoping it stays that way. Next Uro appt in 4 weeks and PSAs every three months for a while. Doc says if we hit a rise will bump the frequency to monthly testing but hope that isn't necessary.
Except for my positive margins, you're somewhat in the same situation as me. Granted, I'm Gleason 9, a 4 + 5, so things are a bit more dicey Gleason wise. But your 7 is a 4 + 3, which nudges you into the high-risk area. Congrats, however, on your lack of positive margins, and your relatively small tumor mass. I forget which, but some expert essentially said even the smallest amount of tissue between the cancer and the margin precludes positive margins. You were indeed lucky. Still, your pathology report showed perineural invasion and extraprostatic extension, which are also bad signs, so I can see your doctor's concern. Here's what the Johns Hopkins tool for assessing chances of recurrence shows for your stats:
Quote:
Probability of Biochemical Recurrence
(detectable PSA level) at
3 years after surgery: 19% (7-44)
5 years after surgery: 29% (11-62)
7 years after surgery: 40% (16-76)
10 years after surgery: 48% (21-84)
All numbers represent predictive probabilities with a 95 percent confidence interval
In my case, my first oncologist recommended strongly that I immediately begin adjuvant radiation and mono-hormone therapy, based mostly on my Gleason score. I chose to consult with Dr. Scholz to see if I could wait instead for the first signs of recurrence, just in case I could beat my 50% odds. There is research to show that therapy begun quickly after recurrence is as effective as adjuvant therapy, and he was willing to let me try to beat the odds. His proviso, however, was that I get bi-monthly ultra sensitive tests. This test is available in major cities, so it is possible for almost everyone to have it done. My local clinic sends mine to Mayo.
We agreed that if my PSA began to rise even slightly, if a second test confirmed the rise, I would begin treatments. My first few tests came back undetectable: .01 or less, making me very happy. Then a couple of weeks ago, my test showed .03. I have just repeated the test and am awaiting results, but I fully expect that the PSA rise will be confirmed. Dr. Scholz has already said that if that happens, I will go for radiation and triple hormone therapy. I'll know next week some time.
I mentioned all this to show you that, in my case at least, Dr. Scholz would not wait for a PSA rise to even .1, much less the traditional recurrence threshold of .2, before taking action. From my research, I better understand his reasons. I've seen several reports indicating significant recurrence risks tied to high Gleason pattern, perineural invasion, extraprostatic extension and other factors. High Gleason grade (4 or 5) alone is a very strong indicator. Other research shows the advantage of quickly beginning treatment once recurrence happens. After reading much of this, I have wondered if I was wise to have waited at all. I probably wouldn't have if my first oncologist hadn't so doggedly opposed triple hormone blockade.
Anyway, I offer all this up as food for thought. You might want to spend some time in PubMed to better understand your recurrence risk. A good article to start with would be "Nine Decisions Before Choosing Radiation Therapy After Prostatectomy", which you can find using the popular web search engines. If you feel uncomfortable, you might want to consider trying the ultra-sensitive test.
I wish you the best.
Tom
< edited >
Last edited by Gleason9; 06-17-2011 at 09:02 AM.
Reason: Clarification
The following user gives a hug of support to Gleason9: Baptista (06-22-2011)
The Following User Says Thank You to Gleason9 For This Useful Post: Tall Allen (06-17-2011)
Thanks, Tom. I do realize that I'm at higher risk for recurrence. My Uro does not consider my <0.1 mm left margine to be negative. Clinically, because it is so close, he considers it a positive margin. I asked about ART vs. SRT yesterday. He is concerned about the side effects of ART and possible QOL issues since it is possible that I may never need radiation. Also realize that microscopic cells may not all be contained in the prostate bed and if that were the case, RT alone would not be a "cure" either. I have also run the numbers through the Sloan-Kettering Model so I know what the odds are but unfortunately, so far playing the odds hasn't worked out so well for me. I know that ART vs. SRT is a controvercial topic and have read up on it to some degree. There does not appear to be clear evidence through valid clinical studies that show one is appreciably better than the other in terms of longevity, although ART may provide some advantages but not without its risks to QOL as well. I do wish we had more sensitive testing here but the berg I live in just doesn't. I would probably have to go to Shands or Mayo and then my HMO insurance probably wouldn't cover it, not to mention the 400 mile round trip involved every time. At this point, I will hope for the best (continued <0.1 PSAs) but if we do encounter a suspected BCR then I will opt for HT combined with SRT and won't wait for the PSA to get beyond 0.2 if I can help it. Just have to hope for the best and move on. Thanks again for the response.
-Bob
If I run across the article I saw about positive margins, I'll send it your way. The subject may be moot, however, what with your extracapsular extension.
Please find the following article using a search engine: "ASCO: RT Shown Beneficial for Prostate CA Subset." It reports on an abstract read at a recent American Society of Clinical Oncology meeting about a Phase III study which has not yet been published (and so isn't on PubMed). The study found that combined radiation and hormone therapy reduced overall mortality by 23% and disease-specific mortality by 43% versus hormonal monotherapy alone. The study is: "Intergroup randomized phase III study of androgen deprivation therapy (ADT) plus radiation therapy (RT) in locally advanced prostate cancer (CaP)."
I know your feeling about RT not being a cure, but studies have found that in most cases, recurrence is local (I've seen this mentioned by Myers and in other papers). So in fact, there is still the chance for a cure with RT, and this is probably borne out by the better results mentioned in the abstract. Of course, radiation is much better and safer now, and with triple blockade, QOL for hormone therapy is better and more effective as well.
Based on this recent study, I'm getting both. But I think we'd both agree I have greater chances for adverse results.
By the by, why do you continue to see an urologist? After all, your plumbing is gone, so a surgeon's expertise is no longer optimal, unless you need to deal with incontinence or erectile dysfunction. Have you considered seeing a medical oncologist instead? Any cancer treatment you'd receive would be from an oncologist of some sort, and the "medical" variety might not have so many biases.
Best wishes,
Tom
Last edited by Gleason9; 06-17-2011 at 11:40 AM.
Reason: Please do not copy material from another website. Thanks!
The following user gives a hug of support to Gleason9: Baptista (06-22-2011)
The Following User Says Thank You to Gleason9 For This Useful Post: Tall Allen (06-17-2011)
Thanks again, Tom. I am still in the 90 day follow along period post sugery so that's why I'm still seeing the Uro. I also have ED but fortunately am 99.9% continent. I am also in a passive study through a Cancer Center here in Florida and although I have not been seen by an Oncologist yet, that is definitely an option if I choose to. My Uro won't have the last word on my treatment, but I am going along with him at the moment. I am very aware of the reserach on the benefits of HT + RT vs. RT alone. Should I ever need RT I will definitely request the combination. You mentioned that you are getting both, but is that because it is your primary treatment, or post surgery because of a rise in PSA (Salvage)or is it Adjuvant? The issue I was more interested in were studies on Adjuvant vs. Salvage Radiation Therapy post radical prostatectomy (and would include HT with either method as well). I have found nothing that clearly demonstrates an advantage to ART over SRT. If there are studies that clearly indicate an advantage to ART over SRT, I would like to read them. I am at a very good point in my treatment (still in at home recovery mode with lots of time on my hands) to learn all I can about what could be the next step for me, but without evidence to support the advantage the risks don't seem to outweigh the benefits...to my current level of knowledge. I am still very new to the game so I don't pretend to know a lot..maybe just enough to be dangerous. lol
Thanks again and I wish you the best with your HT+RT treatment. May the benefits be great and the side effects few. Be well...
-Bob
Last edited by rcroller; 06-17-2011 at 12:09 PM.
The following user gives a hug of support to rcroller: Baptista (06-22-2011)
Since you do not know if you failed RP yet, I agree with you that I don't see the big advantage of beginning radiation before your PSA goes up, and hopefully, it never will. It is safer in terms of cure but the downsides are the side-effects of radiation.
As long as you monitor PSA regularly, even with a non-ultrasensitive test, it seems likely you would still will be able to catch it early enough for, hopefully, curative salvage RT. I agree that it's usually locally confined, so the risk in waiting seems reasonable to me. But everyone has their own risk profile.
I have a friend in a similar situation, so I hope you'll keep as informed as to your progress.
- Allen
Last edited by Tall Allen; 06-17-2011 at 02:46 PM.
Reason: corrected after re-reading earlier posts
You are reacting like I did - get it out fast! Surgery may turn out to be the best course, but there are other options that could be superior, and it is very important to follow the sequence Ready, Take Careful Aim, Fire, rather than Fire, then take Aim. (Fortunately, with my high-risk case and a fine medical institution handling my request, I was rejected for surgery. I'll insert a few points in green and expect to add more later.
A local support group, such as one of the many chapters of Us Too International, can probably provide some good leads.
Re: Just Diagnosed - Gleason 8 
